Neurosurgeon tomorrow..
 

...and I'm petrfied!!

I feel rubbish, have another pressure sore, the whole of London is under the strongest security level available in the UK, they are checking public transport constantly... and mum and I are going to have to attempt to cross London by public transport in rush hour..

and that's before I even get to the appointment. I am trying not to get too excited about it - I just don't think I can cope with another doctor who feels they cannot do anything, but offer to refer me on. Gr!

Oh well! so, please keep your fingers crossed for me!

Love

Froggsy xxxxxxxxxxxx

Frogga,
This isn't a good time to be in London. I know the feeling...after living in Asia for for 10 years, and Germany for 8, I know how scary these things can be. Can you take some pain meds before you go? We will all spread our arms around you and you mum, and no one will be able to hurt you without going thru us first. :rain: (the only bumpershoot I could find). Let us know how it goes.
Mary
:grouphug:

Dear Frogga -

I can well imagine what it must be like getting around under all that security. Very depressing actually. The closest in my expererience was after a very strong earthquake in LA and a month later the traffic is still crawling, the aftershocks are coming in and the water fountains are taped off due to the possibilty of contamination. That's when it starts to get on your nerves, or at least mine.

Good luck though on the neurosurgeon. I figure there's always a chance you can pick up some helpful information, even if there isn't an available procedure. And I don't know about you, but I find that nothing deflects my fears better than some information, even if it's only as to the trajectory of the projectile heading my way. Somehow I feel better just having the information. Do you know what I mean?

Mike

Fingers and toes
 

Well with Pn that can be a little hard,i've never tried crossing my eyes.
Ok i have and i just keep thinking my Mom is going to send some thunder.
:eek: she was so sweet but very much agains't crossing our eyes. I
hope you and Mum have a safe trip and help from your NS. Many Blessings
and :hug: Sue

Hey there Frogga, I'd cross my toes for you too but they hurt too much! I'll be thinking of you though and hope you get some good news for a change. Don't give up on the doctors though. I know it is hard but there really are some good ones out there. As you probably remember I went to ten before finding one. I guess you have to kiss alot of toads before you find a Prince. please let us know how it goes. jeannie

Hi,

Well. It was appalling..

When we got to the railway station mum smacked my hip really hard on the car door when she was lifting me out of the car, so that didn't start the day off that well! Then went into the station and discovered they'd lost my piece of paper which says I am allowed to take my wheelchair on the train. Finally arrived in London (after threatening the guards on the station) to discover it was pouring in rain and that because of the wheelchair taxis wouldn't take us.

FINALLY got a taxi to agree to take us and went up for my appointment. I hated the doctor on first sight and was abit surly. He was horrific! Apparently I definetly have RSD and RSD dystonia but he doesn't think I have "generalised" dystonia as a secondary disease (Which I knew), but he believes there are more important neurological components as my reflex tests were abit weird. He wants to admit me for 6 weeks to try and find out what is happening, with MRI's, CTs, spine taps, EMG's and anything else he thinks of and also I can then have physio and psychological support. HAHAHA. (Apparently I am too blase about being ill and don't take it seriously enough, yet 2 seconds later he said I should relax - he wasn't going to hurt me).

So... he lied. Basically. I refused to allow him to use tendon hammers, pins or anything else, so he just did it anyway and just sat there and watched me in tears whilst he did it. He finished and then said "that wasn't too bad was it?". Er it was.

I am so fed up with all of this. I don't care if I have MS, MD or whatever else he thinks is wrong with me. I want treatment and I want to get on with my life and never have to see another doctor again.

I don't think it helped that I called him a useless, arrogant a"$hole who I hadn't wanted to see anyway.

I can't believe he was willing to inflict that level of pain without permission, and refused to listen to me. So just imagine the letter that is going to be sent back to him from me.....................

I just can't handle anymore of this. It is driving me nuts. I hate doctors, I hate hospitals and I just want them to go away.

Love ya

Froggsy xxxxxxxxx

Aw Honey, I'm so sorry he put you thru all that.:yikes: I was hoping maybe he had at least 2 functioning brain cells close enough together that they could communicate with each other. :Trapeze 2: Sometimes we just hope. You had me laughing my butt off picturing you telling him off. I love it. What are you going to do next? there has to be someone who can help you. If anyone deserves decent treatment it is you. You are always up and always have your humour. Don't ever change.

Mary
:grouphug:

Sweetie, I am sending you the ((((hugest hugs))))!! Hang in there. That's awful!!

Lots of huggies for you, :hug: :hug: :hug: :hug: :hug:

Love ya!

Nessy :heartthrob:

So sorry you had such a horrid time of it, Frogga. I was hoping good things for you. But, please don't give up trying to find a decent doctor. You are much too young to be going through all this. I know you are tired of all this but there really are good docs out there. So, take a mini doctor break and try again. In the meantime you will be in my thoughts. Jeannie

Thanks everyone so much, I am still pretty gutted about it. At one point the Dr was trying to suggest that it might be because I was "stressed" or because my body was "upset with itself so shutting it'self down". Erm. Right. Did you actually LOOK at my scans? my thermographies? my bone scans? my x- rays? the reports from the orthopeadics, neurology, rheumatology, opthamoligist and whichever other specialists have co-ordinated my care over the last couple of years. Obviously not. This Dr also appeared to know almost nothing about RSD - yes, he said I had it, but I said it was impossible to seperate the movement issues I have - RSD makes my muscles tight and stiff and incredibly painful, dystonia makes my muscles tight and stiff and pretty painful. He asked me the stupidest questions then didn't listen to the answers.

Mary - thanks! you cheered me up, the fact that me being rude to a doctor... I got thrown out of physio after threatening to bite the physio if she ever came near me again - so she wrote to my PM dr saying that she didn't feel my pain control was adequate. I also nearly threw a plate of food at a consultants head after he went to try and touch my leg. oops!!

IHH - thanks as ever babes

Rogue - he said that he would think I had something to hide if I didn't let him, and that I was impeding his work as a doctor. Doesn't matter that he apparently knew how much pain I lived in. Also, I was having a pretty bad day when we went up there - so all that travelling plus dealing with idiots never places me in the right frame of mind for dealing with doctors and trying to explain the most complicated medical history in the entire universe. meugh. Are you ok? There were some fittish policement though :winky:

Dawn - Thankyou so much hunny xxxxxxxx

Hey Desi - Thanks as ever babes! I hate hospitals and will do anything to stay out of them - but mum wants me to go in to see if they can help or at least better identify what is going wrong with me. I am just not convinced that this will help me, but never mind.

All my love and thanks so much everyone... I'm just still so gutted over this whole thing, it's really hrd.

Love ya all

Froggsy xxxxxxxxx

Jeanie - Thanks babe! I am going to have a mini dr break before I see anyone else again, I just can't handle them at the moment!

Frogga Sweetie
 

At the very least if you go into the hospital you will not have to depend on your sister for anything!! No more doing without food or food you can't eat.:D And just maybe some Drs. there will take an interest in your case and see what might help you. I for one vote for the hospital, if it doesn't go the way you think it should, check yourself out. Whatever you decide we are here to support whatever YOU feel is best.:hug: Carose

Dear Frogga -

I am so sorry to hear about what you went through. It sounds horrible. That said, do you have any idea of what sort of palliative care they could offer while you were/are hospitalized? I only ask because a number of years ago, I was in Philadelphia for a week long lidocaine infusion before being considered for ketamine, and when the lidocaine didn't work and the pain remained intense, the nurses were right there with the Demerol, which wasn't a bad way to go.

Second thought, I know they don't have ketamine in the UK, but there is quite an active program in Germany. Is there any way through the NHS that you could get a grant to participate in a high dose ketamine study in Deutschland? Could this otherwise horrible neurosurgeon have any connections in that regard? Just a thought . . . .

We love you.

Mike

Hi Frogga,
 

My PA that I had for years use to tell me I had a sick sense of humor. I laugh at things that most people cry about. I do think though it helps us to get through what we have to go through.

Like you, I had a Dr. in Denver that wrote in my charts that I wouldn't cooperate with him so that he could check out my TOS. He wasn't my regular Dr. there and I didn't need him to examine me for something they already had documented. Needless to say, I never went back to any Dr. in that office.

You would think they'd have enough sense to know that we are already in pain, why make matters worse. Like you, I was so bad off, I could go to a Dr. and I'd cry for days over the pain they put me through.

I like the ideal of the hospital to see what else is going on with you but I would have trouble doing it. I spend over 2 days in one and I am ready to get dressed, tie some sheets together and go out the window.

I would think though this Dr. could send you to several other specialist to ilimanate MS or anything else that is going on with you.

You are so young to be going through so much. I hope that you will get to a point to where you are getting around better and doing much better.
Ada

Dear Frogga -

I withdraw all but the sentiment of my last post and apologize for not having really read your latest. It certainly doesn't sound as though this doctor is anyone in whose hands you would want to place yourself for any length of time. Sorry about that.

Mike

Hey Mike,

I think that if I agree to going in for more investigations with this doctor then i will end up on the psychiatric ward!! He had that look about him - that RSD is psychogenic - he spent far too long asking me about whether I had friends (yes), whether I enjoyed uni (yes), whether uni made it worse (yes), what I felt about carers (useful but wish I didn't have them). Doesn't help I'd mentally fallen to pieces and thus missed out loads of important medical facts from him - but I will try and get my normal neuro to sort things out.

The UK will not consider paying for the ketamine therapy, I asked the PM dr last time I saw him and the apin team don't feel they can do any more for me - although I have a new appointment with the Bath pain management people - as long as they don't try and get me on their "program" as I feel it would be a waste of time.

Grr - I just want to get on with my life, but i know I have to co-operate with the doctors so that they can carry on the inadequate treatment - because inadequate is better than none! oh well....

Thanks so much!!

Love
Frogga xxxxxxx